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Just joined the group...I haven't beem diagnosed with MS but I just posted a blog for my bio on my profile; please read it....I think I may have MS. Many of your stories sound like what I'm experiencing....my hand is throbbing as I type this...0
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Just joined the group...I haven't beem diagnosed with MS but I just posted a blog for my bio on my profile; please read it....I think I may have MS. Many of your stories sound like what I'm experiencing....my hand is throbbing as I type this...
Hi, sorry I can't find your blog - and honestly don't have time to dig around looking for it. You've got your profile closed to all but friends so I can't find it that way either. I'm proud of myself that I figured out how to log in and do what I have managed to do but I just am not as technically savvy as a lot of people on here.
If you can tell me how to find you blog or post a link here that would help.
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Went to see my optometrist yesterday because I had problems with my left eye - didn't want to miss an optic neuritis flareup. He thinks it's just over use of the eye and stress. I've been using drops up to 10 times a day just to get the dryness out and he told me to only use the drops that I have 2-3 times daily and the rest of the time to use a non-medicated kind - I've got Refresh for that.
So, at least I don't have to worry about the ON throwing a monkey wrench in things right now.:happy:
Glad to hear it isn't a flare up!0 -
Just joined the group...I haven't beem diagnosed with MS but I just posted a blog for my bio on my profile; please read it....I think I may have MS. Many of your stories sound like what I'm experiencing....my hand is throbbing as I type this...
You need to get into your options and make your blog public. 0 -
Just joined today.Everyone calls me Nonni. I'm 63, and officially diagnosed with late onset MS, a year ago,suspected,3 years ago. Had a major exacerbation(Doctor thought it was a heart attack.because I'm overweight)No symptoms of heart attack,but I went through the steps. Then she thought it was low blood pressure and diabetes. Changed docs. Next Doc. thought it was weight and low blood sugar. So long Doctor #2. Found Doc#3. She did all the blood work,nothing. Then she realy listened to me. Had me walk across the roo,close my eyes with my arms out, and a few other things. She said I needed a nueralogist. Sent me to one,40 miles away.He had MRI's set up,VEEPs and a few others. 10 lesions and a probabable dx of MS Then more test. Developed Trigeminal Neuralgia ayear ago. Definite dx of MS.
Gas was getting really expensive,so thought I would try to find a doctor closer, I did,but she said she didn't really like to diagnose MS,I might want to check with the MS Society. I checked one more Neuro.,and she had to look at everything and decide if she wanted to treat me or not. Needless to say,I hotfooted it back to my original Neuro. I don't care if he's 100 miles away.
At Thanksgiving I had another flare.Now 13 lesions. My balance stinks. I use a four footed cane for better support (have fallen 4 times,injured my shoulder,had surgery) Have tremors,badly,so quit work Jan.1,2012( I'm a hair stylist.Using shears and a straight razor,did not work out to well).Cognitive problems,and bladder issues.But all in all not to bad.Luckily for me,my body keeps the major exacerbations at bay,without using any extensive treatments.
Anyway,it's time to make the effort once again(and hopefully be sucessful for the long haul) And believe me this body is nothing easy to haul around.
I'm shooting for 160.Eventually.
Thanks for listening,and thanks for being here.0 -
Hey Nonni,
Welcome to the group! Your DX story sounds familiar. Basically rule everything else out first
Are you taking any meds for MS at all and have they helped?
Glad to have you aboard!0 -
Thank you Rob.
I take very little medications. Tegretol 3 times a day(TN),amitriptyline,(for insomnia,and burning,tingling pain),and atenolol(tremors,and blood pressure) .Like I say ,I'm very fortunate,
The tegretol is a wonder drug. I'd be in a raging panic,if I found out it wasn't available anymore.I sleep much better. The tremors,it's hard to say if it's helped.
Thanks again for the welcome0 -
Welcome to the group Nonni,
I'm glad you finally have a diagnosis. I would definitely stick with the neurologist who is willing to deal with you and listen because they are really hard to find.
Take care.
Bea0 -
Hi Nonni,
Welcome to the group 0 -
Lately my stress level has increased, as has the amount of gluten in my diet and my physical fitness has decreased. I find that I am tired often and earlier than normal. I too wonder if it is my lifestyle or my illness. When I start to question I remember what my Nurse Practitioner at the Nero says, "What difference does it make? If you're tired, rest. If your not, carry on." I am determined to get off the gluten and back on the bike/treadmill to keep this under control and appreciate all the help/support/guidance of my MFP friends.
I find Stress and Gluten is my killer too! I really try to eat more veggies and fruits and lean protein and I find I do have more energy too. I love my elliptical. I got myself running 4 miles a day before I had my major relapse in 2010. So it is the closest thing I can get to running. I love exercising, it makes you feel so much better. BUT, MS is a killer for fatigue...I take copaxone too but I do it every morning first thing....0 -
Hi everyone. My name is Vikki. I am not new to MFP (have been on since 3/31/11) and I am already friends with a few of you in this group. However, I did not know there was an actual MS group. And so,...now I do! Great idea. It's so nice to have some folks out there who can actually relate to some of the unique problems or concerns those of us who have MS face on a day to day basis. I have already found some useful info on here that I did not know! Thanks to all of you for being so open and sharing. I was diagnoised in 1997 on my 37th birthday (optic neuritus was my first big symptom) although I had experienced many others but just did not relate them to what was happening to my body at the time. I have been on Copaxone since 1998, but have started to have more and more flare ups as of late--so I believe it is no longer working for me. Not sure what I should try next as I did Not do well at all on Betaseron at all. Also, I have a terrible problem with painful spasticity. I am a horsewoman--who enjoys the outtdoors (which is hard sometimes as I live in the desert) and heat can be a real problem for me -even when I wear my cool vest. I don't want to go on too much longer as its a beautiful day here in AZ and I want to get outside to spend some time with my 4-legged friends! I look forward to getting to know more about all of you and sharing our success stories as well as our challenges.0
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Hi everyone. My name is Vikki. I am not new to MFP (have been on since 3/31/11) and I am already friends with a few of you in this group. However, I did not know there was an actual MS group. And so,...now I do! Great idea. It's so nice to have some folks out there who can actually relate to some of the unique problems or concerns those of us who have MS face on a day to day basis. I have already found some useful info on here that I did not know! Thanks to all of you for being so open and sharing. I was diagnoised in 1997 on my 37th birthday (optic neuritus was my first big symptom) although I had experienced many others but just did not relate them to what was happening to my body at the time. I have been on Copaxone since 1998, but have started to have more and more flare ups as of late--so I believe it is no longer working for me. Not sure what I should try next as I did Not do well at all on Betaseron at all. Also, I have a terrible problem with painful spasticity. I am a horsewoman--who enjoys the outtdoors (which is hard sometimes as I live in the desert) and heat can be a real problem for me -even when I wear my cool vest. I don't want to go on too much longer as its a beautiful day here in AZ and I want to get outside to spend some time with my 4-legged friends! I look forward to getting to know more about all of you and sharing our success stories as well as our challenges.
Hi Vikki,
Glad you found the group
I'm kind of at a stand still with medications right now too.0 -
Hello Everyone
I'm glad I found this group. It's been a long time since I've talked to others dealing with MS. I was dx'd in 1994 after two bouts of numbness and MRI apparent lesions. In 1997, I lost the vision in my left eye which scared me enough to try the *new* drug Copaxone. I've been on Copaxone since December 1997. There is no question it has helped slow the progression of my disease; however, it has been more difficult to take in the past year and (maybe not coincidentally), my baseline is worse than it used to be.
I typically have flares ~once/year, sometimes bad enough to warrent high-dose oral steroids, but overall, they aren't bad. I work full time and manage my fatigue by working from home one day a week (my employer has been wonderfully supportive through the 18 years since my diagnosis!). In 2007, I lost 50 lbs through the age-old method of counting calories and walking my crazy dogs (Shiba Inus). In the past two years, my weight has crept up 10 lbs and the spasticity in my legs has gotten pretty bad, so I am motivated to lose the weight and increase my exercise repertoire.
In addition to walking, I use a recumbent bike at home. I ride for 60 mins at high resistance while watching a DVD of the latest episode in whatever TV series I'm into [I've been through all the Star Trek series, Mad Men, Downton Abbey and am now in the 5th season of Lost (which has been awesome!).] I recently started doing calesthenics in the morning and am very sore, but happy to be able to do them without falling over.
I'm interested in hearing how others are fighting the weight battle while coping with balance, weakness and spasticity problems. I'm also very curious about the oral med folks are using now. I'm really sick of the shots. They hurt every time now and it's hard for me to remember/justify why I'm inflicting pain on my already battle fatigued body.
I'm pretty new to MFP, so feel free to friend me
Sue0
